Hearing the child's voice in healthcare: a systematic review of participatory approaches

Title: Hearing the child’s voice in healthcare: A systematic review of participatory approaches.
Background and aims: In preparation for a project that aims to engage rural families as co-researchers in the development of health resources targeted at both children and parents (or carers), we reviewed what participatory methods and approaches have been used with these populations. There is a growing expectation in healthcare that end-users are included in the co-creation of health resources and interventions but there are few critical reviews that provide evidence-based guidance on the best ways to engage in participatory approaches with families, especially children. This review aimed to help address this gap.
Methods: A systematic search of key databases was conducted using key words and subject headings. Peer reviewed studies were included based upon meeting eligibility criteria. Assessments of methodological quality and sufficiency of reporting of the participatory approach were conducted. A critical narrative approach was used to synthesise findings.
Results: Out of 26 eligible studies, only one was from an Australian context. This Australian study described the co-design of an obesity community prevention program for Māori and Pacific Islander families based in a metropolitan area. Co-researchers on this project included parents, cultural advisors, health professionals and multidisciplinary researchers, but not children. Most of the other eligible studies were of low to moderate methodological quality and no correlation between methodological quality and sufficiency of reporting was found. Twenty-three (88%) of the studies involved children or adolescents as co-researchers (age range 3 to 17 years). A wide variety of methods and activities were utilised in the studies. Practical findings about the conduct of participatory research with children will be presented, including the frameworks utilised, the multiple activities co-researchers engaged with as part of the participatory process, and how co-researchers engaged in shared decision making.
Conclusion: It is now over thirty years since the release of the United Nations Convention on the Rights of the Child, which resulted in an increased awareness of the importance of hearing from children on issues that affect them. This review found no peer-reviewed papers on the development of health resources which included the child’s voice from the Australian context. Involving children, and their families, in participatory approaches in healthcare may result in more acceptable, targeted, and sustainable resources and interventions for them. This presentation has shared practical insights into conducting participatory approaches with children as co-researchers to inform and enable clinicians and researchers to achieve greater engagement with children and their families.